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Dad is poorly - Carers UK Forum

Dad is poorly

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Hi I am fairly new to the forum having only posted a couple of times in the past week.

I'm at a loss and I need to off load so I hope this is ok and I'm sorry for the length of this post.

It all began 13 years ago. My mother had a heart attack and was in hospital for 6 weeks. During that time my father was diagnosed with oral cancer. I was being made redundant from my job and had been ill after catching a bug on holiday. I have been diagnosed with M.E, polyarthritis, heart problems etc etc. and haven't been allowed to work since.My dad had to have half of his tongue removed and rebuilt with a 'flap' from his arm. Since then he has existed on 6 ensure medical milkshakes a day plus whatever liquid calories we could get into him. My mama was diagnosed with breastcancer 4 years ago which had metasized the time it was found. She was having treatment then we found it had spread to her brain.She died 10 days after this new diagnosis. I was her main carer and was with her, by myself, in the hospital when she died.

Since then I have taken over every hig she used to do household wise. My dad is of the generation that he worked and my mama took care of the house. I have been doing that for 3.5years now as it seemed logical as I live with my dad.

He was diagnosed with mixed dementia about 2 months ago. They put him on a tablet ( which was the topic of my first post here) which they then doubled the dose. Since being on the tablet and more so since the increase my dad has undergone a change. Sleepy depressed and not drinking his ensures - his own source of nutrition. It has been an uphill battle particularly for me as my dad and I have never really had an easy going relationship. We are too similar and butt heads. Last week after c9ntacting the mental health team we removed him from the tablets, hoping to see and improvement. Sadly things have become worse and he has taken to his bed only getting up to go to the toilet. His weight has dropped alarmingly such an amount that he is now skeletal. I have tried and tried to get him to drink, bribery, encouragement, and tears. Nothing has worked. We had the doctor paramedic out again yesterday as I am at my wits end and my dad is deteriorating. The end was topic of conversation.
After discussion with my dad's GP it was agreed that the GP would come out to see dad today.

He is in agreement, my dad has simply had enough and has given up. GP did a mental capacity evaluation to ensure that my dad was aware of the situation and to make sure that he had the right opportunity to decide if he wanted to go to hospital or stay at home. DNR forms were also 'discussed'. I say it like that as since my dad's cancer surgery his speech has been affected and more so now he is weak and dehydrated.

So now it's just waiting for his body to shut down. District nurses are being contacted as I am unable to care for him properly due to my health issues. I am struggling to get him straight in the bed etc etc.

I am beating myself up because although I spend every day with my dad, in the evenings I stay at my partners for my 'down time'. I do have a sister but she can only come over 2 times a week. I feel I should be there 24/7 and yet on the other hand I don't want to be. I sat by my Mamas bedside for 4 days, day and night, talking to her and just being near. My Mama deteriorated so quickly I don't think I really had time to process what was really happening until it happened. She passed looking like herself, just sleeping and she was in the hospital. My dad has changed so much in the last 2 weeks, it's breaking my heart. Hr had said for the past 2 weeks that he didnt want to go to hospital and if i called anyone in he would leave the house ( he is a difficult stubborn bloody minded man). so today was the gp explaining the situation and a while after had gone, it was me re explaining things that he is v poorly and because of the tablets and because he hasn't drunk his drinks it's looking pretty bad. The GP said of all the patients he knows who have had Oral cancer, my dad has done the best to survive as long as he has. I would rather my dad goes now before the dementia gets him fully but oh my God. to watch him literally waste away in front of me. in the past 2 days I have seen things and had to do things I never thought I would for my dad..the strong, independent argumentative man that I know..and love reduced to this.
i am literally scared that I am going to walk in and find him gone. My stomach is twisting constantly. I'm in tears, not knowing how long this journey will last. I want to respect his wishes. he made it clear today he wanted to be at home but I went back home tonight to check on him ( as I can't go all night without otherwise I will be driving myself crazy) and I think he has deteriorated since the GP visit at lunchtime. He can't last long on the few sips of liquid I am managing to get into him. he is on antibiotics for a chest infection but I feel like I am stuck in a foggy limbo. I don't want him to go, but I do. I feel awful, like the world's worst person, for saying that. I just don't know if I can handle watching him deteriorate further. distinct nurses should be in contact tomorrow to arrange support but I'm lost. I can't just switch off that he is my dad and it's breaking my heart seeing him like this. How do I get through this end of life journey? I don't want to let him down or make it seem like I am neglecting him..but I'm honest to god frightened.
Dear Anna

This is an awful situation for you. I just wanted to let you know that someone else is awake and thinking of you,as I see you are browsing right now. You have nothing to reproach yourself for. You are a loving and caring daughter and have done so much for your mama and dad. Sending a hug as I have nothing else to offer.
Hi Anna, I'm dismayed at your dad's apparent assumption that you will do everything until the end, completely ignoring your own health issues. I've had the same happen to me too, in different circumstances.
You should NOT be dealing with this on your own.

Ring the GP this morning and ask him to arrange a FAST TRACK NHS Continuing Healthcare Assessment for a start. How can dad make a proper decision when he has dementia?!?! Your dad needs to be either in hospital or in a nursing home or with 24 hours care at home provided by a trained nurse. A Fast Track application for CHC should make any of these a possibility for dad, The GP must make the application and care should be arranged within 48 hours. Whatever dad says, you CANNOT be forced to care for him. You are entirely within your rights, at any time, to say "I can't do this any more" and ring for an ambulance.
Ask Social Services for an URGENT Carers Assessment and explain the situation.
Has the doctor explained anything at all to you about how the body shuts down. When my mum was clearly dying, in a nursing home, I Googled "signs of dying" and found all sorts of helpful information which explains that at the end, the body only accepts the food and drink that it can manage to process with organs that are not working very well. So placing pressure on someone to eat and drink is inappropriate.
Another difficult thing is to decide which funeral director you should use, and make tentative enquiries about costs etc., so that when the time comes it will be easier for you.
Finally, you have absolutely nothing to feel guilty about, on the contrary, feel proud that you have supported him for so long when you really should not have been. Now is the time to hand his care over, for professional 24/7 nursing.
Thank you. Dad isn't expecting me to stay and do it. Far from it. He is very independent and even me trying to help him sit up or have a drink is frustrating to him. It's more me. I feel is should be doing more but I don't know how I can.

I came home this morning and found him on the floor. I think he must have tried to go to the toilet in the night. He got to the bathroom once I got him up but on the way back he was far too weak and also collapsed a number of time on the 15 step journey back to the bed so I supported him the whole time. I'm thinking of getting a baby gate for the top of the stairs as if he falls I don't want him falling down the stairs. He is definately weaker today than he was yesterday. The district nurses team should be in contact today but I will definately call the surgery and ask for a rapid access. Dad's dementia is mild and he is capable of making decisions. Thats why the Dr came out yesterday. to assess that and i know my dad and he was making sound decisions about his care. Itwas his decision not to drink the ensures as quite rightly he had had enough after 13 odd years existing off them.. I think i would have given in well before now tbh if that was me. I'm sorry for offloading ( i apologise alot, I have been told when I went through cruis bereavement counselling after losing my Mama.

I know there are people in worse situations and I'm dumbfounded how you guys can do this stuff day in day out. This has only gotten intense for me the last week or so. I'm thinking days for Dad but they said he could last week's.
Hi Anna, there is never any need to apologise for "offloading", in fact it's absolutely vital at times. Please do not try to help dad up if he has fallen. You must call the ambulance to help you - they won't mind, and there is no point in giving yourself lifelong back problems (others here have had that misfortune).
Make absolutely certain that the GP makes the Fast Track Continuing Healthcare referral today.
Hi Anna,

I just wanted to send a huge ((hug)). Yes, a scary time. My mum died in much the same way, although she was in hospital. I remember that time vividly. Just remember that even though dad can't speak, the senses of hearing and touch last much longer. Talk to him, maybe give him a hand massage and just be with him. I am sure though that dad would also want you to look after yourself and give yourself a break. After all, this may be a marathon, not a sprint; you do need to pace yourself. Do what you can but try not to feel guilty (easier said than done!). You are doing everything possible; it may just be time for you to give him permission to go.

Hope that you get some home nursing to support you at this dififcult time.

Sending a virtual hand to hold,